UDN

Solving Medical Mysteries
Through Team Science

How to Apply

The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund, made up of medical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.

Due to the complex nature of the body and the diseases being investigated, we cannot accept all applicants into the study. However, we do fully review all applications we receive. For more information about the UDN and the application process, please review our frequently asked questions.

Application Requirements

Before applying to the UDN, it is important to discuss the study with a health care provider. If you want to submit the application online, you will need an email address and access to the Internet. If you do not have an email address and access to the Internet, you can request a paper application by calling 1-844-RING-UDN (1-844-746-4836). You will also need to ask your health care provider to write a study recommendation letter. The study recommendation letter must include:

– A summary of the applicant’s medical problems
– Date when symptoms were first noticed
– Previous diagnoses
– History of evaluations and tests
– History of treatments and medications
– Current medications
– Family history
– Health care provider’s diagnostic impressions
– For pediatric patients: prenatal and birth history

We have prepared a sheet of information for you to share with your provider, as well as a set of example study recommendation letters.

Once you have the study recommendation letter, you can fill out an online application through our website, which we call the UDN Gateway.

You will upload the study recommendation letter directly to this website. It should take less than 20 minutes to complete the online application. Please DO NOT email the application or study recommendation letter to the UDN.

When the UDN has received your application, you will receive a confirmation email. The UDN will let you know if more information is needed before your application can be reviewed.

Application Review Process

After your application is submitted, it will be assigned to one of the UDN clinical sites for review. The assigned clinical site will contact you (typically within one month of application submission) to request additional information, such as:

– Medical records
– Laboratory studies
– MRI, X-ray, or CT images (can be sent on CD)
– Photographs or videos
– Pathology slides and reports
– For pediatric patients: growth curves

In order to help with the application review process, you can begin to collect these records while preparing your application. However, you should not send any medical records until you receive specific instructions to do so from your assigned UDN clinical site. Your assigned clinical site will provide instructions for submitting medical records. Do not send any medical records to the UDN Coordinating Center as this may delay processing of your application.

After all of the necessary information is received by a UDN clinical site, it typically takes 6-8 weeks for the network to decide whether to accept an applicant.

The UDN Gateway